Middle of end stage 7

Wag91

My husband is only 66 and was diagnosed in 2018 with frontal lobe dementia with expressive aphasia. I am his full-time caregiver at home with the help of hospice since 2022. Currently his FAST score has him placed in the 7b stage. This last 6 years has been the most difficult time for our family and we have been told it will only get worse...because his body is healthy the decline has been long, challenging and heart breaking to watch this once intelligent, strong, vibrant man become childlike, incontinent and non-verbal. We've been told this stage could go on for another year..would love to hear from anyone in the final stage grieving for an end to this horrible disease.

Jeanne C.

Hi and welcome. My husband (65) is still in stage 6 so I'm not where you are yet, but wanted to say hello and that I care. This disease is truly awful. My husband was smart and active. He spent many years as a CPA, taught for a decade at the local college, could build you a computer in his sleep, and researched everything that drew his interest. Now he shuffles around the house doing laps of the kitchen island, mumbles, and can occasionally be engaged by a coffee table book about puppies. FTD has taken so much from our husbands and also from us. I hope you'll find this forum to be a place of support and comfort.

Wag91

Hi Jeanne, it is such a relief to connect with others that "get it" 😊 my husband used to be an avid runner and did various marathons, loved the outdoors! His walking with a "purpose" all around the house and in our backyard would start when he got up at sunrise until he went to bed at night. Drove me nuts because we live in Arizona and the constant opening the back door when it is 120 degrees is hard on the utility bill! That all changed a few weeks ago when he couldn't get out of bed on his own. Now he spends his day in a recliner watching Disney movies. We never know what tomorrow will bring, but count our blessings we're able to care for him at home and he seems comfortable. Thank you, feels good to talk openly about this disease and the need to bring more awareness for everyone touched by it.

CStrope

https://alzconnected.org/discussion/68019/middle-of-end-stage-7

Welcome to our group (even though none of us want to be here). My husband just turned 69, was diagnosed 3+ years ago, but definitely had symptoms for at least 6 years now. We also have the constant movement going on, I can barely get him to sit down when he eats! Bob was a high school science teacher.....mostly anatomy/physiology. Ironic, since now he doesn't even know what a brain is, and he used to teach all about exactly what he's going through. As of 2 weeks ago, he is now wearing diapers. He still urinates in the toilet, but for some reason, since his last problem with constipation, he chooses to poop in his diaper!! It took about 10 days to fully get over the constipation episode, so now we're back to our regular daily grind! I never thought I'd be changing poopy diapers and wiping my husbands stinky butt, but here we are.

Wag91

Hi CStrope,

Ah....the life of incontinence...not sure which is worst 💩 or urine. Here is a question, how many bowel movements should a dementia patient have each week if they're not very ambulatory? How many calories do they need? Protein, fiber...besides medication, what causes all this constipation....the disease? Until my DH got sick I never realized how much time is spent on bodily functions 🤪

GothicGremlin

Hi @Wag91 I'm just a bit ahead of you with my sister. She's right in the middle of stage 7, mostly at 7c.

Peggy was diagnosed in 2018 also. She was 59 at the time, and turned 64 a few months ago. Until right around this last July I would have said that she's in good physical shape, but that's not true anymore. Since June she's lost almost 70 pounds, which is just terrifying to contemplate. She's very, very, thin now.

I think this is the FTD speaking and not the Alzheimer's, but she often knows who most of us are. There are times when she has no idea, but when she has clear moments, she does. She also has more of a vocabulary than I think most do at this stage.

One of the hardest things to handle right now is that when she talks, it's not much more than a whisper. Sometimes it's not even that. But when she talks, I can make some sense out of what she's saying. Of course sometimes it's just loopy and I have no idea what she's trying to tell me, but other times there's no doubt that she knows what she's saying.

Stage 7 really is a bear. I feel ya.

Wag91

Hi @GothicGremlin ,

Does your sister also have asphia?

GothicGremlin

Yeah, very much so.

DCCEPEK

So glad I found some serious chat on ladder stages. Gosh what a relief. My MIL is just here. Her walking in circles for for weeks has finally ended. She's bent over furniture walking now. We've been on hospice for a while now and thankful for their help. MIL is medicated tends to drool and she still verbal and determined. Not sure how much more we can handle trying to tuff it out. MC isn't an option for us. Feeling so isolated. Thankful for all of you.

CStrope

https://alzconnected.org/discussion/comment/200095#Comment_200095

Why is MC not an option??? no available facilities or financial reasons? I'm getting ready to relinquish my current lifestyle in order to place my husband, realizing my health needs it.

GothicGremlin

Hi @DCCEPEK - Have you talked to an elder law attorney about memory care? There might be a way to get it that you haven't thought of.

DTSbuddy

How do you deal with the word salad talking? My DH situation is similar, very restless, opening and closing cabinet doors, moving things from one place to another. He can speak short phrases occasionally, but mostly his language is a jumble of words and non-words, at a low volume. I stopped straining to try to make sense of it over a year ago. I asked him about his thinking process, whether it was like a dream where everything is random and disconnected, and he said, 'yes.' I do listen, because it calms him down, And I try to unlock meaning. Sometimes I ask him, are you referring to so and so, or are you talking about our walk, or a movie, and he may say 'yes' or 'no.' but there is no follow-up. What do you think is going on in the mind of someone with aphasia. Is he thinking in pictures? Sometimes he gets agitated when I cannot understand, but usually just drops it. Ideas welcome. Thank you.

Jeanne C.

https://alzconnected.org/discussion/comment/201994#Comment_201994

This is probably one of the hardest things. Your husband, the person you have talked with nearly every day, can't really hold a conversation. My husband has behavioral variant but has progressed far enough for the aphasia to kick in. I just try to get to what he needs. When he rambles, unless he's in distress, I make active listening sounds and answer vaguely when he seems to be waiting for a response. But he doesn't talk a lot anymore. He answers questions in a word or two, but not always correctly (ex: when I offer him something he may say no, but reaches out for it anyway). I honestly don't know how they think behind their speech. And when you add in cognitive issues on top of it, it must be even more complicated. Have you considered asking his doctor for a speech therapy referral? It may help him and the therapist may be able to coach you on how to help.

DTSbuddy

Thank you, Jeanne C. Sounds like we are doing very much the same things - 'active listening sounds and vague answers.' I nod, look where he points, and pay attention to his gestures and expressions, and as you say, 'try to get what he needs.' Interesting that you have dealt with behavioral issues before your husband started getting aphasia. That must be really difficult, and isolating. My DH has been quite polite and acceptable for the first two years, just sad, while losing his speech, but now he is exhibiting more problematic behaviors relating to basic hygiene, inhibitions, safety and social interactions. I have people who have taken him for walks, but they have trouble keeping him on the sidewalk and out of the bushes. Thanks for writing. I had not heard the term 'Behavioral variant'. I looked it up and found a description of this type of problematic behavior. Also found some resources, such as memory.ucsf.edu So thank you. We did try some speech therapy exercises, but his short term memory loss made that sort of pointless.

One thing I like to do at the end of the day is to tuck him in bed and describe something we did today that was fun, and something he did today that was useful and well done, (that is assuming I have a shred of emotional energy left by 9 pm.) Best of luck to you. One day at a time.

FTDCaregiver1

Great Forum for FTD folks. My DW will be 61 in a few days, has EO FTD, PPA. First showed signs in 2017, could no longer work, diagnosed in 2019. She lost the ability to coherently speak by 2020, now word salad, occassional fu##, dam# alot of nooooooos. Incontinent since 2020, has severe anxiety, pacing, loud talking, clapping, whining. Still she does communicate but very much on an emotional level in response to stimuli around her. Over the years we still connect through active listening, redirection and lots of hugs, she's very much into what she sees and hears (tone) and. On ADLs she can be coaxed to lift her feet when changing, walk into the shower, basic eating with hands and even a spoon. When she's content, she chirps (saying bits of nice words like...sweet, nice...pretty...love". When she's anxious the bad words and loud behavior happens. Through all of this, over the years, we still connect through hugs, holding hands, walking and face to face..she often will smile when I smile, laugh a bit when I laugh as words no longer have any meaning to her.